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13/52 The three pillars of effective patient advocacy

When observing what type of expertise and capabilities made patient advocates particularly effective in their work, I found that these broadly grouped into 3 categories:

- knowledge about their own condition

- understanding the systems around them

- skills and tools

One had to cover all three categories to be successful- without understanding the disease nor its treatment options, it is hard to push for progress. Without understanding how new medicines or diagnostics are approved and how countries come to decisions about reimbursement, worrying about lack of access has no teeth. And seemingly unrelated skills like project management or public speaking or effective networking or IT skills can make the difference between being an effective patient advocate or not.

As all three categories seemed important, I called them the 'three pillars' of effective patient advocacy- just as in a building, you cannot simply remove one and still expect the construction to work.

This is the original slide that I made for the opening session of the ESMO patient advocacy track in 2016.

MPNE's educational strategy that will be described in a separate post builds on these three pillars, defining educational goals for the different parts of our network- nodes, hubs and cores.

In brief,

Pillar 1- Melanoma

Covers the understanding of Melanoma, the origin (pathophysiology) of the disease, the staging (how far a disease has spread), available treatment options as approved by the EMA (European Medicines Agency) in the European Union, the role, importance and limitations of guidelines and current most relevant developments.

Pillar 2- Systems

A very broad category for all systems that affect patients, such as drug development and access: the R&D process, regulatory approval, HTA (Health Technology Assessment), reimbursement and insurance systems but also financing of drug development, risk sharing agreements and innovation in the overall space; the research ecosystem: research policy, research funders, research infrastructures, research institutions; overall trends and developments: data and digital transformation, sustainability and equity.

Pillar 3- skills and tools

Patient advocacy can require skill sets that one maybe didn't need before like organisational skills: project management, running an organisation, organising events; communication skills: how to a communication and dissemination strategy, social media, website design, writing and speaking; educational skills: educating an adult audience, both internally as well as externally; effective mental frames and constructs and tools like workshop or sessions formats (like 'how to read a scientific paper', and '45 min with a scientist'), templates and tool kits (such as V2A2).

In our annual planning for MPNE, we aim to cover the entire spectrum- Melanoma, systems and skills- to help our community to be successful in what they care most about: making a difference in Melanoma.

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